Hello! I am starting Actemra next week. I was Dx with PMR in 2004 and in January of this year and landed in the hospital with GCA and the worst headache of my life. I also have RA. I switched rheumatologists and my new one recommended I research and consider starting Actemra. I would like to know if anyone has been successful in managing their conditions with Actemra and any advice anyone has would be greatly appreciated. There are two studies out this year with fantastic results. I'm hoping others may report the same.
My dad is getting ready to start taking Actemra at the suggestion of folks at Cleveland Clinic. It is still considered experimental in the US for PMR/GCA but we are hopeful it will help. He has been on prednisone for about 15 months, starting at 60 mg, only down to 40 now. He has extreme osteoporosis only diagnosed after 5 broken vertebrae and now congestive heart failure, also missed diagnosis. He likely won't start the drug until after the first of the year. I'm praying for a miracle because things are looking grim. Would love to hear about your experience Nitrobunny.
12 Mar 2017
i Started Actemra In Jan.2016 after being on large dose of Pred for 4 years for PMR AND GCA and after failed methotrexate treatment. I begin to improve after 3rd IV Dose. I was able to reduce prednisone dose from 40mg to 10mg. I was having no flare ups, energy level was increasing and I felt really good. IN June of 2016 ..after dose 6 ... I had sudden onset abd pain that was a ruptured bowel. ( The number one side effect listed for Actemra). Because I had such a big improvement of the RA problems on Actemra it was decided by me and a collaboration between my internist, Surgeon and RA specialist to remove most of my colon and do a permanent colostomy. It was a very easy decision for me. I am now back on Actemra. The Pred dose is coming down again and I am relatively pain free. The colostomy is not a problem to manage. Bottom line, I am happy to be back on Actemra . Be sure you discuss all the side effects of this drug and what your options are if the treatment fails with your Rheumatologist. Know All the pros and cons. Good luck to you.
18 Aug 2017
Hello I was diagnosed with GCV in June 2015. By February 2016 I was unable to reduce my daily prednisone below 30mg without my symptoms returning. I started Actemra in April 2016 and was off Prednisone in February 2017. My GCV is under control, all my bloodwork is normal but unfortunately I now have PMR. I'm still taking Actemra 1 time per week and back on 5mg of Prednisone daily since April, the pain dissapeared. It is now August 2017 and for the past week I'm cycling between 5 and 2.5mg of prednisone, aches in my neck and thighs has returned, I will take my time not to have a relapse. How did the Actemra work for you?
18 Aug 2017
I have been on Actemra for about 1 year. Mostly it has been great for me. I was having flu type symptoms about 2-3 days after my infusion. My doctor added Leucovorin which is high dose folic acid and those symptoms of joint pain, muscle aches and fatigue subsided. I have infusions every four weeks. I have Cogans Syndrome a form of vasculitis and have been without a flare since starting the Actemra. Good luck to you with your new treatment.
18 Aug 2017
I don't have anything to add on this one, Nitrobunny. I did want to wish you, and all of our companions on here, all the best. I'm sending well wishes and prayers that you get through, and improve and feel better. Copshop
P.S. i think its good to see some advances in treatments happening. To those that don't know... your rhumi is so important. You need the best you can find.
7 Dec 2017
I just had my second episode with GCA, and my rheumatologist recommended I start Actemra this time. I am still doing the blood work, so haven't started yet, but would also be interested to see if this will control the flare-ups. How are you doing? Are there a lot of side effects with this?
7 Dec 2017
I have been on the pre-filled syringes for Actemra since my Enbrel stopped work (on it for 15 years). Started the injections June or July of 2016. It took a little while to work (about 2 months). I do not take anything for pain, not needed. Do the injections every 2 weeks. It has worked well for me so far. Oh I have RA. Had it since Spring of 1975.
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